i have been told today that I am stage 1b instead of 1a1, and that I definitely need a hysterectomy. Ct scan and MRI next week to check no spread to lymph nodes etc. poss radiotherapy etc too.
i cannot describe how gutted I am. I am telling myself to catch a grip, and if I had been told all this two days age it would still have been better than hoped, but I am so disappointed to have gone from 'all gone' to 'probably all gone but can't be sure.'
Has anyone else had an experience of this?
And what are others' experiences of stage 1b treatment?
So sorry this is happening to you, can understand why you feel like you do.
I was told at my colposcopy that they had 'got it all' so it was a shock when I was told I had 1b1. The tumour was higher up the cervix and that's why it wasn't seen at the colposcopy. At least you know they are not leaving anything to chance by having the hysterectomy. I was fine with the op and it went much better than I thought it would. Luckily mine hadn't spread so I didn't need any radiotherapy, fingers crossed you will be the same.
Ask any questions you want and message me anytime. You'll get through this and we'll be here to support you.
Hi so sorry it's been upgraded. A similar thing happened to me, I was told I was 1a2 worse case scenario based on inconclusive biopsies to then be told after lletz I was 1b2 and surgery wasn't option. I know it's hard to take in but it is totally natural to feel completely different to how you did before now that there is a change in treatment also. The only good thing is its still a very early stage and can be treated very effectively, focusing on theach positives :).
I had something similar in 2008, i had abnormal smear CIN 2 they said, had LLETZ done under GA, 2 weeks later i was told it was 1A1 cc, was told i would need a wider loop then they told me i didn't & that there was enough of a clearance margin to say they'd removed it all, they said i would require 6 monthly smears for 1st year then every year there after for next 9 yr, so i just accepted this & got on with my life, symptoms with irregular bleeding etc never really improved and continued to get worse, each time had smears, all were reported as normal, so it was a big shock to me to discover after my hysterectomy(which i asked them to do) i was told they'd discovered stage 1B1 cc. anyway to cut a long story short, my oncology doctor seemed to think that they never did clear the cancer in 2008 & infact a larger loop should have been done, someone got it very wrong with me, no-one has ever explained why all my smears & test were normal, i now have a medical negligence claim in since went on to have another op in Jan this year to remove fatty tissue, lymph nodes etc, all results were good, your's is still in early stages too, so hopefully a radical hysterectomy will be all the treatment you need
